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Originally Posted by MAT52
Thanks once again Enbloc. It's great to have you here helping me get my head round it all. Sorry that it's bit one way. I hope that you have someone equally wise advising and explaining things to you in the way that you always do with me here and on the SJS World forum.
You have a very good point about the dryness. My husband hasn't looked up SJS yet (maybe never will!) but when I gave him a brief verbal synopsis he commented, "well I've known you since we were 19 and you've always had so much dryness everwhere - I'm amazed you don't have visible cracks!". I had total alopecia twice as a kid and once post gestationally, and was always caked in eczema and had severe blepharitis and frequent conjunctivitis (not painting a very glam image of my younger self am I?  ).
And my sicca has been flaring for a month now - then will come nose bleeds from dry sores at the top of my nasal passage. It's a cycle that I'm getting familiar with. And itchy scalp always although no dandruff. Ugh!
But the rheumy registrar explained that scleroderma was unlikely if my main rheumatic disease began five years ago, because by now I'd apparently have Calsinosis and digital ulcers. I don't think I would necessarily because this started to show up as RA and I've been on aggressive DMARD therapy for a few years although off these for a year now. But these drugs would have slowed Scleroderma or Sjogren's or both down significantly anyway.
But still a lack of skin involvement makes it less likely for the time being. Anyway it can be ruled in or out by a nailfold capillary test though and my hospital is the second best in the UK for Scleroderma - second only to the Royal Free in London. So I should know soon enough but I've photographed my nails and looked close at the folds and can see no sign. But it does need a microscope and some drops of oil to know for sure of course. I hope I'll be monitored well now but I do have to return to my old island home for six months over the winter. I plan to come down once a month as our house is being made habitable by builders and I can attend the doctor and hospital appointments while I'm here. It does complicate things a bit but can't be helped.
Have you come across anyone on DMARDs and IViG I wonder? Is Myco used for connective tissue diseases in the States? And if so have you heard of people with SJS who are successfully treated with Mycophenolate Mofetil? If these could be combined then that might lead to a good outcome for me possibly. Oh well I will just have to be patient. Not the easiest thimg for me at this stage I admit! |
I take both Plaquenil and IVIG...and have for a number of years. Don't put too much stock in DMARDS. They are really just a baseline treatment and not all that effective when it comes to Sjogren's. It's reported to help with fatigue and joint pain, but I still have a ton of both symptoms. I have never seen an actual study of how effective it really is for slowing progression. Would it have been worse had I not taken it...possibly. But it's certainly not a miracle drug by any means. Of course, I have other AI disease process complicating the issues. Doctors still use DMARDS, but biologics have taken over for treatments of acute disease process.
Speaking of that. Overlap does NOT just happen from the start of an AI process. You could just now be developing Scleroderma secondary to the Sjogren's...that is the point I was making about catching it in early stages. I only developed PsA withing the last 2 years, yet I have had Sjogren's for 20 years +. So I agree with your rheumy about what stage you would be if you had scleroderma 5 years ago...but I'm talking about you possibly developing it NOW as an overlap from the Sjogren's (which you've obviously had for a while). I think you will get a good 'looking over' now that you have this new Dx. just don't let something like your toes and elbow go without at least being checked for sclero since you now have the confirmed Sjs Dx...especially with that ANA pattern. That is not the common pattern for SjS...it IS the common pattern for Scleroderma.
I dismissed my dryness as I never knew any different. So my mouth may be drier than other people, but to me it's not that bad (as I have times when it's worse). I have always had dry skin, constipation, GI problems, etc....so I probably this long before my major onset of neuro issues in 1996.
I also took Cellcept (Myco) for a while, but got a life-threatening infection while using it and had to have emergency surgery and stop the Cellcept. I can report that I found Cellcept way more helpful than just Plaquenil during the time I used it...noticeable reduction in symptoms. But my doctor was hesitant to restart it after that horrific infection that almost killed me (and took 4 months to get over). But keep in mind that I am also immune deficient...so that complicates the problem for me with using biologics that suppress the immune system. You would likely have a much better result than I did, being that you are not immune deficient.
I hope I can help you. I didn't have anyone to provide me info along the way. I picked it up in bits/pieces from my doctors, etc before 'forums' were in wide use (20 years ago). Don't hesitate to ask me anything. I think you'll find that so much in your life now makes much more sense with this Dx (I did)...everything sort of fell into place once I started to really understand the impact of Sjogren's on every system in your body.